In a previous post, I introduced some of the changes in the new Text Revision of the DSM as it relates to autism. In respect to what the APA calls “Autism Spectrum Disorder,” the DSM-5-TR changed part of its criterion from “as manifested by the following” to “as manifested by all of the following.” They say that this was done to improve the intent and clarity of the wording. I think it was done to decrease the prevalence of autism in society. Yes, that was a bold statement. I will explain. But, first, some definitions.
An important place to begin this conversation is the difference between the way in which an autistic person may see themself, or how they choose to identify, and the ways in which the system sees autistic people. To that end, we have to start from the emergence of the word in the collective consciousness. Query the literature and you will find that autism was originally described in 1943 by Leo Kanner as a behavioral syndrome. He based his definition on patterns of behaviours that a person exhibits. He concluded that autism was a neurodevelopmental disorder and that ‘these children have come into the world with an innate inability to form the usual, biologically provided contact with people.’ Embedded within his work is the concept of diagnostic heterogeneity. Diagnostic heterogeneity is the standard to which symptoms are compared, comparisons with prior experiences, and a comparison with socially expected responses. To understand how the system views autism, as a disordered typical system, it’s important to understand diagnostic heterogeneity.
In the Special Education literature, autism is defined as a developmental disability significantly affecting verbal and nonverbal communication and social interaction, usually evident before age 3 that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected because the child has an emotional disturbance.
The IDEA defines it as a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
DSM-V: “as manifested by the following”
The APA’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5) provides standardized criteria to help diagnose ASD.
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Diagnostic Criteria for 299.00 - Autism Spectrum Disorder
To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior.
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior.
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make co-morbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Under DSM-V, individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified (PDD-NOS) should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
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Again, to meet diagnostic criteria for ASD according to the previous regime, a child must have persistent deficits in each of three areas of social communication and interaction (Section A) and at least two of four types of restricted, repetitive behaviors (Section B).
DSM-V-TR: “as manifested by all of the following”
Now, under the current regime, to meet diagnostic criteria for ASD, a child must have persistent deficits in each of three areas of social communication and interaction (Section A) and all of the four types of restricted, repetitive behaviors (Section B).
Sections C-E
Age of diagnosis (Section C): Notice the emphasis on the word “child,” as opposed to “person” throughout the statute. This aligns with Section C, as well as the other language noting the “onset of symptoms” in childhood / early developmental period. Questions in the diagnostic battery center around when symptoms were first noticed.
Place (Section D): All of the issues noted in Section A / Section B must cause clinically significant impairment in social, occupational, or other important areas of current functioning.
Can something else explain what clinicians are seeing (Section E): Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
First off, what happens when a person doesn’t meet all the diagnostic criteria for an autism diagnosis? The language notes that the person should be evaluated for social (pragmatic) communication disorder. So, what is social pragmatic communication disorder (SPCD)?
Newly added to the DSM-5’s Communication Disorders section, SPCD refers to a “primary deficit” in both verbal and nonverbal communication used in social situations.
Such difficulties may include:
inappropriate communication in certain social contexts
difficulties with using language to socialize
not knowing how to use and understand both verbal and nonverbal cues
a lack of understanding regarding nonliteral language
SPCD symptoms may vary in type and intensity between individuals. Below are just some of the signs of SPCD:
difficulties with adapting communication skills to different social contexts, such as greetings and initiating conversation
inability to switch between formal and informal language
problems with taking turns during conversations
difficulties with using nonverbal communication techniques during social interactions, such as eye contact and hand gestures
difficulty understanding nonliteral language, such as inferences, sarcasm, metaphors, and idioms made during conversation
making and/or keeping friends
Having one or more of these symptoms doesn’t automatically mean you have SPCD. To be diagnosed with this communication disorder, the DSM-5 notes that the symptoms must significantly interfere with:
interpersonal relationships
your ability to socialize
work
school
Thus, the first question most people have is, how is social pragmatic communication disorder different from autism?
As of the DSM-5, SPCD is considered a separate condition from ASD.
Some of the symptoms of SPCD may seem to overlap with those associated with ASD, including what is formerly known as Asperger’s. A 2017 study concluded that SPCD may not seem completely different from ASD, but may include common traits. However, the DSM-5 has placed SPCD in its own category as those that are not caused by any other underlying developmental disorder or medical condition.
Similar communication difficulties that may be noted in ASD include:
seeming “lack of attention” in social interactions
difficulty engaging with back and forth conversations
talking with others without giving them a chance to respond
But, in a general sense, those diagnosed with SPCD will likely not have any of the issues noted in Section B of the autism diagnostic criteria.
My Commentary
Let’s say, for the sake of argument, that you’re seeking a diagnosis of autism for yourself. For some reason, you need that 299.00 diagnostic code so that the supports you need to survive / thrive can be accommodated and the costs covered by an insurance plan. You’re an adult. You’re employed. You’re housed. You have at least one significant other in your life (friend / partner). All of these assume that you’ve managed to acquire some coping skills that allow you to function (at least minimally) in a variety of contexts. You may choose to mask in order to accomplish what you need to accomplish in order to remain employed, housed, in an interpersonal relationship. Are these facts proof that you, a typical human have been “cured” or have grown out of your childhood difficulties? Put a different way, is there actually an autistic neurotype that is different from a typical human neurotype, a neurotype that exists without relevance to place?
Indeed, that’s the main question that the TR brings to mind. Can we actually be autistic? Or must we have a disorder that impacts our ability to function in certain contexts / places?
This is the question that underlies my provocative statement in the beginning of this article. If we can only “have” this “disorder” in connection with some context / place, those outside of those contexts won’t be seen as being “affected.” Thus, prevalence will decrease.
Think about a parent who homeschools their child. If the parent is able to accommodate their child’s needs, and the child is seen by the parent as thriving and growing, can that child be autistic under the new regime? Consider also that in the West, the majority of diagnoses of autism come from schools.
I think about the families that I have worked with, who have attempted to navigate their health care plan to receive an ASD diagnosis for their loved one. Under DSM-V, the process was long and stressful. If the child had good grades, that’s evidence against autism. If the child was having a good day when observed, that’s evidence against autism. In other words, evaluators were looking more to exclude than to include. This is due, in large part, to the perceived costs of autism to the health care system.
That was then. It’s much tougher now. The new regime links the diagnosis to place more than ever before. If you’re in a place where your neurotype is severely out of place and thus you’re not able to successfully function - congratulations, you “have autism.” If, however, you’re in a place where your neurotype is accommodated and you can live a relatively productive life - sorry, you don’t “have autism.” You likely “have” some other disorder.
Seen in this way, the medical world invalidates the whole idea of neurotype. It also invalidates the idea of an autistic or neurodivergent identity.
What now?
I believe that, in the short term, there will be an increase in those self-diagnosing as autistic. There’s already a tension between diagnosed and self-diagnosed autistics in some spaces. Unfortunately, this tension and conflict will likely get worse. It’s sad really. We do need each other as collectively, our voice is much stronger.
Right now, there are too many small, regional groups that are attempting to advocate for autistic people. The larger, national groups hoover up the donations, but aren’t interested necessarily in helping things go right for autistic people. If things are going to change, the mass of autistic people, both self-diagnosed and diagnosed must band together. We must form a union of sorts. Then, we must focus our advocacy in two areas - the defeat of the APA as the gatekeeper and the defeat of moneyed interests that seek to profit off of our plight (e.g., Big Pharma, Autism $peaks, etc.). We must drive research and literature in a direction that validates what we know - that there is a separate neurotype and identity that we now call autism. It’s been with humanity for at least 50k years (Reser’s Solitary Forager Hypothesis of Autism). It’s survived natural selection because it’s useful to the survival of the human species. Thus, let’s stop trying to extinguish it. Let’s support it. Let’s embrace it. Let’s celebrate it.
As always, I invite your comments. Join with me and support authentic voices advocating for a proper place for autism in the conversations about autism. Thank you again for reading this week.